I've been through it due to severe osteoarthritis in my hips, and not having any cartilage in either joint. I went to their doctor, and then two surgeons before I was approved. I was turned down the first time, even when their doctor said I would pass their "test." I ended up looking through their blue book for what qualified, and used that along with records from both doctors in my statement. I still had to wait 2 years. A lawyer is your best bet. You'll have to give a 15 year history, which IMO, is just another joke. Reapply immediately when you're turned down the first time. I was told they do it to discourage the ones who are trying to game the system.
Thanks for the link to the Bluebook, Burn -- I've added it to our articles on disability application.
As I've noted in recent newsletters, the Bluebook criteria for neurological disorders are presently under review for the first time in 30 years. I will monitor and report on outcomes as they unfold. Facial neuralgias and migraines aren't in the book explicitly at present, but many advocates are requesting that this be changed.
Regards, Red
Thanks Bonnie, I will!
Bonnie Gray said:
Hi. I live in Canada and was approved for Long Term Disability 4.5 years ago. They are looking for the buzz words, ie. what triggers your TN and how you are able or not able to cope. They will look at the amount of prescriptions you are on and how they affect you. I.E. Dizzy, Tired, Incoherent, Unable to Drive as you are technically Impaired, your pain intensity, lack of Memory skills to do your job, “being spaced out” all the time from the medication, in severe pain, etc. make sure you use those words. Hope this helps.
Bonnie
Thanks flounderer…how are you now?? So glad you were able to proceed so quickly. I’m still getting forms to fill out I. The mail! Ugh.
flounderer said:
Dancermom… I went through this in 2010. It may not be as harrowing as you think. After suffering with TN since 2004 I underwent MVD surgery in 2008. Surgery was successful for one year. The TN came back with a vengeance. I never remotely considered the pain could have become worse, but it did. Honestly the time I was not in pain paled in comparison to the time I was…daily.
I was treated by Dr. Edgar Ramirez in Tampa. To this day, I consider him a brilliant doctor. He told me there was no medication to relieve the pain and the best I could do was to take enough meds to make life tolerable. My TN resulted from a very nasty fall in 2003, to the best of current medical opinion. I crushed a foot, broke my back and hit my head (fell 35 feet to concrete). I jumped through all the medical hoops thrown at me with no success.
Synopsis…I applied for disability in 2010 and I suppose in part to my having had the MVD surgery, spinal implant, and thorough history of medical care, I had my first check in less than one month. I wish you the best and if I can answer any questions, email me directly at amacknovak@hotmail.com. Best Wishes and good luck
Yes…thank you for the link burnbabyburn ~ and the encouragement! Will indeed keep going, I have a good lawyer and he is NOT one to give up…me either! 
BurnBabyBurn said:
I’ve been through it due to severe osteoarthritis in my hips, and not having any cartilage in either joint. I went to their doctor, and then two surgeons before I was approved. I was turned down the first time, even when their doctor said I would pass their “test.” I ended up looking through their blue book for what qualified, and used that along with records from both doctors in my statement. I still had to wait 2 years. A lawyer is your best bet. You’ll have to give a 15 year history, which IMO, is just another joke. Reapply immediately when you’re turned down the first time. I was told they do it to discourage the ones who are trying to game the system.
Thanks for this advice. I had my husband take over on my disability because dealing with the people was actually interfering with my recovery from the surgery and affecting me emotionally more than I realized. It is private disability as opposed to Social Security. Ironically, as soon as he took over, they gave us a new person who has been much more cooperative. We have gone to each of the doctors who treat me and my husband came along. He asked them--Given my wife's diagnoses, do you feel she can do her job--and then outlined what I do. If they seemed hesitant, he then told them I was on short-term disability at the present time due to the fact I had the MVD surgery several weeks ago. He then asked them if they felt I could return to work, would they be willing to write a letter stating I could return. They have all written reports stating I cannot work. I will have to see if this will be enough for the disability people. My family doctor did not offer to write one. However, he was happy to try to interject his own thoughts as to what my neurologist and pain management doctors "should" be doing to treat me. I will be finding a new family doctor. Linda
Boomette said:
I didn't even use an attorney. I didn't get turned down either. My husband wrote a letter and attached it to my application. I don't know what he said (and I haven't found out to this day) but I'm sure he gave his personal view of what living with me is like and how it affects our lives. I'm sure it was very descriptive. The visit to their doctor was pretty much a joke though. Just be honest. I frankly thought giving up a large chunk of my disability check to an attorney wasn't something I didn't want to do. Don't know if anyone else has done this, but sometimes I think they push back harder if you have a lawyer.
Hi Cris,
Try to remember that many times it is "normal" doctors doing the evaluations. This should always be the case. However, I know that does not always occur. I am a psychologist and I do--or at least did Social Security Evaluations. I also did them for insurance companies, BWC, private attorneys etc. For Social Security, you should be sent to a neurologist who specializes in this area. However, this does not always occur. It is not like Social Security would ask the neurologist if they specialized in trigeminal neuralgia. You would have to hope if they did not know that much about it that he/she would look it up. When I was being diagnosed, I had three neurologists diagnose me, yet the neurosurgeon I first saw still did not believe I had it. This is when you need an attorney. If the neurologist SS sent you to does not have experience with trigeminal neuralgia and give you a bad report, your attorney can find a neurologist who does that can dispute what the SS neurologist has said. Then the judge or arbitrator can make a decision based on what has been said by the two neurologists. If the judge rules in favor of SS, then you can appeal. That is when your attorney has to make sure he/she has chosen a really good neurologist to write a report and dispute what has been said by the SS neurologist about you that was not true. Hopefully this makes sense.
Linda
cris said:
Oh, Joe.. I thank you so much for your words! I have given all my medical records up to date to my lawyer along with all meds...but NEVER thought about the depression part!! I was on an antidepressant before my MVD ... Hmmm! Any advice in how to keep my lawyer 'honest' and on a true timetable?? And yep, the longer this drags out, the more they make... The alternative (from asking others and weighing the odds) seemed grim, so opted to do this way.
Squid said:hello, you stated you were applying for long term disability, do you mean social security disability? If so, you will probably be turned down on your first request. The reason SS does not have enough medical records or history to make determination. IF turned down, you need to file your appeal right away, Lawyers like to drag this out as long as possible as they receive 25% of your back awards. You will need to get medical records to them, every thing you can find like drs.seen diagnosis, drugs prescribed, surgical procedures, there is also the depression that accompany this malady, and the depression issues and treatments carry a lot of weight. This second process will take six months to a year depending on your attorneys submitting records in a timely fashion. I would take a friend along when you see their drs. Just to keep them honest and insist they be with you during all aspects of you visits. Also just keep in mind these doctors represent someone's interest other than your own. There findings will not be the deciding factors in your case like anything else it can be challenged. If you are denied the second time, you can appeal and your case will be decided by an administrative law judge and in all likelyhood be awarded benefits. In the interim you can apply for short term SSI benefits, this will keep the wolves from the door while your case is decided. my best to you and hope you fare well. Joe
You're welcome, Red, and I should clarify that the 15 year history is on one's work history.
Richard A. "Red" Lawhern said:
Thanks for the link to the Bluebook, Burn -- I've added it to our articles on disability application.
As I've noted in recent newsletters, the Bluebook criteria for neurological disorders are presently under review for the first time in 30 years. I will monitor and report on outcomes as they unfold. Facial neuralgias and migraines aren't in the book explicitly at present, but many advocates are requesting that this be changed.
Regards, Red
Hi,
I am going to sound like "misery loves company" and I certainly do not mean to. I had my first and probably only MVD on March 21 of this year. It was about 25% helpful and I am having such a difficult time recovering from the surgery. As bad as I hate saying this, I guess I feel better knowing I am not the only person this has happened to. My surgeon was also brilliant and I think he did everything right. It simply did not work for me. My neurologist tells me to remain hopeful and I am, but it is difficult that 8 weeks later I have had to increase my medications and still having difficulty with the surgery itself. I have applied for long-term disability--it is private insurance through my university. I initially applied for part-time short-term disability earlier this year. I was denied because the insurance company said I only had a variant of TN even though 3 neurologists and two neurosurgeons said I had the disorder. I appealed. I was given short-term disability for the 9 weeks I have been off for surgery. It ends next Thursday, May 22, 2014. Supposedly the company did not receive any of the appeal letters I sent them. We now have a new person as the university where I teach stepped in since they received all the information and this was too weird that the insurance company did not receive it. My husband has now taken over as the insurance company was causing me so many problems it was interfering with my health. I have numerous co-morbid disorders, but they ignored those. It is all so weird. My husband and I have an attorney who has helped us put everything together. If they do not approve it this time, we will give him everything. I would love to return to work. I just can't. Linda
flounderer said:
Dancermom... I went through this in 2010. It may not be as harrowing as you think. After suffering with TN since 2004 I underwent MVD surgery in 2008. Surgery was successful for one year. The TN came back with a vengeance. I never remotely considered the pain could have become worse, but it did. Honestly the time I was not in pain paled in comparison to the time I was...daily.
I was treated by Dr. Edgar Ramirez in Tampa. To this day, I consider him a brilliant doctor. He told me there was no medication to relieve the pain and the best I could do was to take enough meds to make life tolerable. My TN resulted from a very nasty fall in 2003, to the best of current medical opinion. I crushed a foot, broke my back and hit my head (fell 35 feet to concrete). I jumped through all the medical hoops thrown at me with no success.
Synopsis...I applied for disability in 2010 and I suppose in part to my having had the MVD surgery, spinal implant, and thorough history of medical care,, I had my first check in less than one month. I wish you the best and if I can answer any questions, email me directly at amacknovak@hotmail.com. Best Wishes and good luck
UPDATE!
My social security disability has FINALLY been approved!!! ~ it has been a process and a BOOK of papers I had to fill out, send in, forms my lawyer and I filled out. Whew!
But yeah!!! ((Happy face!))
It felt like a 100lb weight had been lifted off my shoulders - I’ve been out of work for 2 1/2 years… This is no where what I made of course, but it is absolutely a God-send!! Don’t give up peeps!
((Hugs to you all In the process!))
Congratulations! It can be a grueling process.........I have been working on it for about a year. I was denied and have appealed. My neurologist was shocked that they turned me down and has filled out another form......Questionnaire for Inability to work. Apparently the records were not enough to do the trick for me and the psychiatrist said I was not "depressed enough" .....whatever that means.....not to work and I am guessing since I had the surgery and "only suffer from issues from the surgery" such as daily migraines and now Occipital Neuralgia I can sit in an office 40 hours a week and/or work in the field climbing around in warehouses taking inventory!. So, I am in the hurry up and wait mode again. I will fight this until the bitter end and file again if I have to. Yes -- it is worth the battle and I am so glad that you have won Chris. I wish you many, many blessings. Mary
Mary, hon… This process made me feel like I was a fool for even thinking I was not able to work - that I was not ‘worthy’ of asking for was I earned all my life… Don’t let this make you doubt or let those doctors that don’t have a CLUE what we go through 24/7!! I was told too that my depression was so slight that it didn’t affect my TN, daily life, anything! Hmmm, and those 30 minutes of asking me nonsense questions told her that… Ugh!
We know our selves, our doc’s know us, our families know us! That’s all that matters ~ it’s just jumping through those dad-blasted hoops right now… Ugh!! Keep fighting hon! ~ Blessings to you also, Mary!!
Mary N. said:
Congratulations! It can be a grueling process…I have been working on it for about a year. I was denied and have appealed. My neurologist was shocked that they turned me down and has filled out another form…Questionnaire for Inability to work. Apparently the records were not enough to do the trick for me and the psychiatrist said I was not “depressed enough” …whatever that means…not to work and I am guessing since I had the surgery and “only suffer from issues from the surgery” such as daily migraines and now Occipital Neuralgia I can sit in an office 40 hours a week and/or work in the field climbing around in warehouses taking inventory!. So, I am in the hurry up and wait mode again. I will fight this until the bitter end and file again if I have to. Yes – it is worth the battle and I am so glad that you have won Chris. I wish you many, many blessings. Mary
Congratulations, I am so happy and relieved for you. Now you can focus on your own health.
Hi,
Congratulations, I am happy for you as well! I also wanted to add that my Long-Term Disability has been approved. One of the reasons I think this happened is that I followed the person on this site's recommendation and had my husband send a letter with back-up reports from all my doctors. My LTD people then insisted that I apply for Social Security. There is no advantage for me in doing this, but there is for them. Last week I had an evaluation with a psychologist. She told me she was going to diagnose me as depressed. Ironically, I had not even included depression as one of my diagnoses for disability . She knew about trigeminal neuralgia and said that anyone who has had two surgeries in one year (one for TN and one cervical discs) as well as having had to give up two jobs I loved as a psychologist and a professor, and still had pain, would have to be depressed. I became teary-eyed and could barely speak. Like many of you, I had been so beaten down that I had started to doubt my own feelings. While having the disability helps, I would still like to just be cured or at least have medications that do not knock my socks off. I try every day to do as much as I can. No day is great. Some are better than others, but I try every day. The neck surgery and other physical diagnoses, including hemifacial neuralgia make my situation even worse. I will always keep trying, though. What else can we do?
Linda
Patty said:
Congratulations, I am so happy and relieved for you. Now you can focus on your own health.
Hi, when I applied for my disability, one of the aspects that I mentioned was the side effects of the medication...I don`t know about you but I don`t feel as intelligent as I used to be. My concentration, organizational skills, reading comprehension skills and memory have been affected. I really don`t believe that I can hold down a job and the stress levels would affect me even more. I think that that is an aspect that has to be considered besides the pain flare ups.
At the time I was also taking meds for depression so I was taking 7-8 differnt meds...but now I cut the depression meds out and my intelligence is still affected...but at the time during the assesment I think it might have helped to be so medicated
Victoria, I've talked with other face pain patients who reported on the process they went through for disability. A physician can help in the letter of evaluation that they write for you. They can indicate that you must use certain meds to get even marginal pain relief, but they have observed side effects of the meds that significantly compromise your ability to concentrate, organize, or execute work in an office environment. The impact of such side effects can truly be disabling in many types of employment.
Regards, Red
Hi,
My doctors also included that in the reports as well. If I could take the meds and they did not have the side effects, that would be helpful. The problem for me with the meds is that they make me very drowsy and also I have cognitive deficits. My doctors would write this, but some times it appeared to fall on deaf ears. My husband also wrote a letter of how I had changed.
Linda